May is Lupus Awareness Month

imageslupusI believe this is great information… but I feel like it’s cold and just touching the surface… Wanted to share anyways… I did not write this I just wanted to share as this Lupus kicks my unhappy azz everyday…..I still look forward to each day in hope that tomorrow will be better…As always I hang in there the best I know how…Also I have the organ threatening lupus ..Anyways I hope this can shed some light to a caregiver or a loved one or just anyone…

 

http://www.lupus.org/action/lupus-awareness-month-facts

Lupus Awareness Month Facts

Lupus Awareness Month is observed during May to increase public understanding of this cruel and mysterious disease that ravages different part of the body. Spread the word and share these facts on your Facebook and Twitter.

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May 1. Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

May 2. In lupus, something goes wrong with the immune system, the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that cause inflammation.

May 3. Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

May 4. Most often, lupus develops between ages 15 and 44.  However, between 10 and 20 percent of cases develop during childhood and these cases can evolve into serious health complications more rapidly.

May 5. African Americans, Hispanics/Latinos, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

May 6. Lupus is not contagious and cannot be “given” to another person.

May 7. To make a lupus diagnosis, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

May 8. Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

May 9. The malar, or “butterfly” rash on the face is present in an estimated one-third of people with lupus. This flat, reddish rash across the bridge of the nose and cheeks often is the only outward symptom of lupus (though other signs and symptoms might be present).

May 10. Though all pregnancies of women with lupus are considered “high risk”, advancing technology and a better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

May 11. Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain

May 12. Among people with lupus that affects the skin, poor mental health is common and has been found to be similar or worse than mental health among those with type 2 diabetes, recent heart attack, heart failure and high blood pressure.

May 13. People with lupus have two times the risk of developing cardiovascular disease than do people without lupus.

May 14. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.

May 15. An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.

May 16. Factors that may trigger a lupus flare include infections, ultraviolet light, stress, some medications, environment with some still unknown.

May 17. Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult.
Week 4

May 18. Based on a recent study, it takes an average of six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.

May 19. A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting an incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.

May 20. First degree relatives of people with lupus (parent, sibling or child) have six times the risk of developing the disease.

May 21. Sensitivity to ultraviolet light (present in both sunlight and artificial light) affects as many as two thirds of individuals with lupus, and may cause fever, debilitating fatigue, joint pain, rashes and other symptoms.

May 22. Of the 23 percent of people with lupus who experience severe lupus flares, all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days.

May 23. 40 percent of adults with lupus and as many as 66% of all children with lupus will develop kidney complications.

May 24. Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.

May 25. More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.

May 26. People with lupus usually are encouraged to engage in appropriate daily exercise to maintain muscle and bone strength, but they also need to balance exercise with rest.

May 27. On average, the annual cost of lupus, including expenses related to treatment and loss of productivity, exceed $20,000, and can increase to $63,000 if the kidneys are involved.

May 28. People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.

May 29.  About half of all people with lupus will experience a serious infection during the course of their disease.

May 30. As many as 60 percent of people with lupus will experience some type of memory problem, such as recalling names, dates and appointments or balancing a checkbook.

May 31. With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to having the same lifespan as people without lupus.  (I also have this one…)

Again I did not write this…

The Smiley Thumb Award

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The Smiley Thumb Award

The following are rules for the Smiley Thumb Award:

*Include the photo of the Smiley Thumb Award

*Thank the person who nominated you. Provide a link to their blog.

*Tell us what makes you smile.

*Nominate as many bloggers as you’d like.

*Include these rules in your post.

 

 

I want to thank  Lisa A.  She is such a wonderful and an amazing girl..

What makes me smile. Good Musik of course…My bf and dad.. The many wonderful and amazing people on here that I wish I knew if real life…The early morning and late night.

My nominees for the Smiley Thumb Award are the following bloggers:

Element Healing

All Things Chronic

ghostmmnc

the15thday

Sheldon Kleeman

 

Prince is dead…

Prince is dead at the young age of 57….

I am in shock!!! I am at a loss for words …He was just on IG posting pictures ..

I mean I wasn’t a huge, huge fan I loved his hit songs and the others were pretty deep lyrics ..I think he was very talented man and a mystery as well….

How and why ??? and will it come in 3’s ???

Yes I could say so much more on this post but I will just leave it like it is…

Please comment as you find out more information on his death… I just think he was to young and I heard he led a healthy lifestyle soooooo….

R I P  PRINCE….

Mr Coffee you suck

Well I just posted a blog about not able to sleep and Fibromyalgia in the post about Fibromyalgia (I do not know how to link them) sorry..But feel free to read it so you know the whole story….

I was stating that I was going to maybe start my day but first make some coffeee

well you see now the fucking coffee maker is not working at all ..I did all the normal things to try to make it work like hit it…smack it… rub it down and called it all kinds of nice names but oh no the fucker still will not work…We have to have coffee in the morning ..we sit at the coffee table and drink our coffee and talk the morning away so what the fuck??!!!!

I even tried to make one out of an old ice tea maker but hell no that did not work at all either ..I did think there was hope since it started to make it and then grounds were pouring into it and the top was over flowing even tho I did not put that much water in it and coffee also started to come out from the back of this ice maker…I do not think anyone has had as much bad luck with coffee makers than us really I do….Well just put it out there we only have bad luck..that person has a voodoo doll on all of us and when I find out who they are ohhhh the things that I will do to them…………going on 10 years of really fucking bad luck… if I told you everything you all would be in shock for sure..bad , bad luck..FUCK YOU COFFEEEEEE MACHINE …NO GOOD FOR NOTHING …..Mr Coffee you suck as a brand that is for sure!!!!!!…Now how to tell the guys that the coffee machine is broke and another fucking fact it is not even a year old the mother fucker……

I can tell how my day is going to go… But I will do my best not to let it win.. I will do what I do best and hang the fuck in there………………………..

Insomnia+Fibromyalgia- You so mean I hate you!!

well hello Insomnia why yes I am still up and awake… You do know that I have a full day in town tomorrow the Dr wants some test on my neck done things like MRI,CT you know fun shitt…Dad has blood work to be done as well we have to stop over to his Dr office for a minute then we have to go to the bank make some bills out before we leave and drop them off and um my desk looks like a damn Texas Tornado hit it ….NO JOKE!!!

Since my Fibromyalgia started to peak its ugly mean azz head out I have not been able to do much in keeping things organized like my desk things like that so things have been put on hold as it got worse …I knew it was coming but I was still trying to get things done but with brain fog and shitt it just was not going to happen today Shitt I already feel like calling the MRI place and make it for another day but you all know with chronic illnesses you are not sure when you will feel up to doing something and I really need to get dad his blood work and bank and blah,blah lol….

I have taken my bedtime medication like a good girl um that first dose was around 9pm and I laid in bed and just laying down caused pain I did try for longer than I could really stand hell my feet were going back and forth since I was agitated so I got up out of bed..around 11pm I took my last dose of sleeping medication (I start with the lowest dose first) and well again here I am AWAKE!!!..WOOHOO!!!..Even the pain from my pj’s cause discomfort I am thinking about taking a low dose of Prednesone (I know I spelled that wrong)( aka the bitch pill)also that will keep you up as well.. but fuck at this point I do not care the pain in my back is killing me since I have been up so long I am about ready to take a half of a pain pill but usually never have one after 4ish or 5ish pm every once in a while laying down helps with the pain of that but looks like that is not an option now does it lol..

So here I am still awake thinking about starting my day .. Make some coffeeee (I wish coffee gave me energy) then take a shower and with that brings more pain at times since the water hitting my skin hurts but at least I would not have to do it tomorrow and I could get most of my hair dry lol so I could undo my hair and I wanted to play with my makeup so I thought about wearing some for the day out but would not put that one till around 10:00am or so (I like no look makeup on myself) it differs with the plans of course and I do not wear makeup everyday at all… I could make some noise and make out a few checks that have to be drop off and paid tomorrow and make some deposit slips and things like that ( I believe and hope that I still have a desk somewhere under all this mess) SO NOT ME…everything has a place so this bothers me to no end…

We may get home by 5pm I have to be at my appointment at 1pm and I told the guys that I would cut their hair when we got back home and with my fibro and pain and no sleep oohhh hell I think it just might be a day from hell and I DO NOT WANT TO COME HOME AND LAY DOWN AND SCREW MY SYSTEM UP EVEN MORE!!!!…..We all know how one feels when they have not slept in many hours “loopy” and yuck I do not want to be that way….

Well it is 5:10AM…. and my pain level is a hard 10 : (  I think that I will start the coffeeeee and take my morning medications and take a shower or bath..nah shower this time …

What helps you sleep when you have nights like this? or weeks like this?? and relief from spasm all on my back ?  Any advice anyone? Insomnia,Fibromyalgia and lupus and chronic pain all the invisible illnesses … The ones people look you in the eye and can not see the rough shape that one is in or tell the fake smile from a real smile from you..the silent disease that makes us scream at the top of our lungs but only to be heard in our own brains……

4/11/16

Married 59 years without knowing love

This really upset me and I didn’t know if I should share or not. I left out most of the drama and somethings that really did not fit this post at this time or the point of this….

My dad got a phone call last night from his oldest brother Bernard and his wife Jeanette. Bernard is the oldest of the boys and in the family they had 11 kids with dad being the youngest. They grew up very dedicated I mean dedicated catholic family.

Anyways dad spoke with Bernard for a while and he was ready to rest so Jeanette wanted to speak with dad like they always do so Jeanette told my dad that she would call dad back after she got Bernard to bed since she is taking full total care of him by herself at the age of 87.

Bernard had another knee operation back on 3-22-2015 and did not follow orders and the Dr all of them told him that he would have problems as the same if he does not follow orders and do what they say. So here we are again he has the operation and they set up physical therapy, nurses coming in 3 times a day with therapy well that lasted a week with him he would not do anything and told them all to leave and never come back so his Dr called Bernard and asked what is going on his reply was I AM NOT DOING IT.. I DO NOT NEED IT the Dr and Jeanette pleaded with him but both got yelled at so that was the end of treatment..

He walks with a walker and has trouble bending his knee (his fault) he just drags his leg when he walks. He does nothing at all at ALL he expects to be waited on at all times by Jeanette.

they had 12 kids together and only one who is getting everything when Bernard passes is the oldest is Albert this has the rest of all the kids very pissed off and Jeanette pissed as well. Albert is the only one to visit them and if you speak on the phone to Bernard this is the only kid he talks about..

Jeanette took total care of her mother that she had move in with them at the time till her passing she has always been a very hard worker she did it all like they had to back in the day.

Jeanette calls dad back and she is in tears she is so tired of being the only one that Bernard will let take care of him and she feels all alone with no help at all. She has to wash him everyday from head to toe and dress him and sometimes feed him she has to stand behind him while he sometimes walks to the bathroom she has to pull his pants down and lift him back up and put the pants together for the most part at times he will just pee on himself. REMEMBER he is ABLE to do all this on his own!!!!.. He just can not bend his knee that is it! a few family members have tried to have a talk with him without any luck except getting yelled at and or kicked out or both.

Well Jeanette and dad keep talking and after about 15 minutes dad comes into my room and dad said that he just heard the most upsetting thing he has ever heard from them. Dad said Jeanette told him after 59 years of being married that Bernard has never once told her that he loves her!!!!!! NEVER ONCE.. she told dad even when they were younger spitting out kids that he never told her. she has even told family members and she found out that he never has told any of the kids that he loved them either except Albert the favorite one. Even my other Aunt went to talk to him and got the old stare down with evil in his eyes like his father used to do.

I do not know why she has lived this long with him? I think it maybe do to being very into catholic and going against the bible with a divorce Jeanette still goes to church she walks everyday and on Sunday. I know the bible said in marriage in sickness and in health but he has never told her that he loves her!! this so bothers me!!! It hurts me to know this she is one of 3 people who I looked up to heck I remember being at her house and she would be doing it all and sitting in her chair hand sewing socks for all the kids and going with her to 4 different grocery stores with coupons for the cheapest deals she did it all and now has to take total care of him for him being lazy and able and NO LOVE….

She Jeanette is the only one that sends a card to my dad since August when he had his major operation that he is still having trouble with and healing. He told Jeanette you send me a card all the time and I love it.  she said I will always send you a card every week and she continues to do so and it really makes my dad so happy..

How to live 59 years without knowing love?

I feel like I should or can do something but I’m not sure if I am allowed to know this information at all.

Dad has no idea what to tell her when she calls again if she brings it up again like she has. You can tell she is hurting inside and out it is weighing on her not only not being or shown love for a lifetime but taking care of him when he is able to but will not!!!…

Any ideas on what I could do to cheer her up (without talking to her) What would you do if this was you? or your family? What are the thoughts going  on in that head of you reading this? please share with me.

I feel blessed to have the family that I do 🙂 and the friends I have made on here and the followers I have.. all have been wonderful to me and patient with me while I deal with my illnesses/health and my dad and the very stressful times that we are having . so I thank you all from the bottom of my heart….things will get better oh and to a special someone “dude”  I’m back bitches lol love suzyQ

So please thoughts on this are all welcome 🙂

Life is to short to not experience the highs and lows of love..

Suzette

Well this was fun…..NOT!!!!!!!

We all are just getting home from what should have been a long day from Dallas and Dr appointments ………..

But instead life just likes to throw us curve balls…..well you know what they can do with them balls……..

So we are home and so tired and hot….I did have to spend sometime in the sun and anyone with lupus knows that is not a good thing I hope that I do not flare due to being out in it we will see….oh and I have not ate all day and starving!!!!!! so left overs are in the oven (thank God)….So I’m past the point of being pissed the fuck off and almost ready just to hit the damn bed…..

Good news……. I’m happy it happened close to home and that we all are safe …

So tomorrow off to the Dr office again…yes let us try this again….oh what fun….

I will try to write a blog post about this shit when I get home (if it’s not to late) as soon as I can….

I THINK THAT I WILL HAVE A LARGE CUP OF CHOCOLATE ICE CREAM BEFORE I DO GO TO BED….I THINK I DESERVED IT TODAY….AND I AM STILL HOT SINCE THE DAMN AIR WENT OUT IN THE HOUSE……YEAH IT JUST KEEPS GETTING FUCKING BETTER…..

Happy to be back…Illnesses suck hog ballz…..

Hey Everyone!!.. 🙂

I wanted to put a blog post up to let you all know that I’m soooo thankful for each and everyone  “my followers” 🙂 for still being here since my health problems went fucking crazy!!!!!..

I tried to read post and comment on ones that caught my eye while I was out of bed but since I was not out of bed very long let me just say I am sure that I missed so much… I wanted to show everyone  that I was still here and nothing was wrong when in fact that I could hardly stay at the computer long enough to pay bills…I was a mess… I’VE been dealing with my fibro/lupus flares,anxiety and severe pain along with the darkness of depression….yeah I was no good or use to anyone…I failed on those test my illnesses were stronger (this time) 😉

 

So with that said I noticed one day while looking around here that I had missed so many comments and it bothers me!… so as you can probably tell that I’m doing a bit better so I want to take the time and get back to these old comments that you all took the time out of your day to write to me I want to get back to you all  I feel in order to grow and continue that I have to do this first and again it is only fair and I want to read them as well…so every comment will have a reply…. I have seen blog post where people would ask questions in the comment section or even the blogger would ask questions to followers and to my surprise the blogger would never answer the comments that ones ask…I guess some are just like that? But that my friend is not me at all….the whole idea of getting feedback good or bad or a comment and interactions that is what i want and hope to get…

So off to my comment section now then eat a nice homemade dinner that all 3 of us helped with and go from there….

I do have yet another doctors appointment in Dallas tomorrow  maybe two of them if they can work me in…. One is pain management the other one is my Lupus and arthritis Dr ………..LET US HOPE FOR GOOD NEWS…I KNOW I SURE COULD USE SOME THESE DAYS….IT HAS BEEN ROUGH!!!…..But I shall fill you all in on the good and the bad…even if you do not want to hear it haha….

So any advice on ways that have help you work thru fibro/lupus flares and chronic pain? and lets not forget the damn anxiety it was so bad that I could not focus on one single task and seemed as if I was living on my Xanax with no luck at all… I mean it is to the point that I’m not living my life at all just going thru the emotions….what do you do in these times? oh I can not leave out depression that fucker…..

hope to hear back from everyone and again I will return soon as I get back into my routine by that i mean rest from doctors office and the damn drive……

How To Prepare A Trip To Dallas…The Best Way I Can!!!…

How to prepare a trip to Dallas… The best way I can!!!…

  • The good points…
  • It’s supposed to be nice
  • The drive is pretty
  • The glass / mirror buildings shine bright in the sun
  • Nighttime the buildings light up
  • The skyline

I will not be driving (best part)…

I will pick out my outfit tonight and have it ready to go and take my shower (who am I kidding) I will get my clothes ready in the morning and no you can not watch me shower 😉 …

No need to set any alarms since I am one that wakes at all different times during the night and usually up very early…

When I wake with coffee in hand I will sit there and enjoy it while I tell myself this trip is going to be fun… At this time I will take my Xanax as directed (if needed) along with my morning medications. I will remind myself again to breath and I’m blessed to have a wonderful man driving me to the big city of Dallas. He is a professional driver with a CDL he has been in a big truck since he was able to walk also he has been all around the USA in all types of weather so it’s not him I’m worried about at all…It’s the idiots out doing there so-called driving or what they think is driving (this in its self that drives my anxiety through the roof)!!! The ones that want you to hit them so they get paid hell all the signs heading to Dallas are “have you been in an accident or injured call us we will get you the money you so deserved…I’m not a sue happy person sure I know things happen but when it is just stupid on their part or just for the cash then NO!.. Accidents happen but it doesn’t mean we always have to sue the person. My man will see me get scared and his saying is ” worry when you see me worry” so I usually try that and it does work he just drives in his own grove and let the asswipes do what they do…

Rough Road Ahead
Rough Road Ahead

My appointment is at a not so bad time to be driving in Dallas (if such a time exist)

I will start getting ready get dressed I do have to do my make up sitting down since I can’t stand very long (but hey if that’s the worst part then A-OK)… I do have to do my hair and it’s past my waist almost below my but it’s natural curly but needs to be cut bad it’s not curly looking when it’s like this so most of the time I do it straight but either way to stand THAT LONG KILLS ME!!!…PAIN really sets in!!!..I will have to take breaks for sure…then the usual brush teeth blah, blah,blah… My make up is hard at times to do when my hands start to shake so that is always fun (I really don’t want to look like a clown) or do I… just depends on the mood I’m in 😉

We have at least a 65 mile one way trip ahead of us so we do make the best of it… I tell myself I can do this… just have faith…well I do have a lot of faith for sure but how my anxiety gets the best of me and one would think that I was the one driving after all.. so I’m blessed very blessed in many ways and not driving there is one great blessing…The fact too is that we have to do this trip every month so it is nothing new at all to me or us…most of my doctors are all located in Dallas so should be a piece of cake oh (cake sounds good about now) or pecan pie I will take both please… My anxiety has just been getting more frequent I think stress is playing a major factor in this either way I hate it…

So after make up on and yes sunscreen under it as well as all body parts exposed to the sun (all is covered) I even bring a jacket just in case… with lupus the doctor doesn’t even want my desk by the window.  My lupus is pretty advanced (we will talk about that and other health in another blog at a later time) I’m just trying to be more proactive about my health then I have in the past so I’m learning the hard way but at least I try my best at all that I do…

Well drinking water by now and going easy on it since we all know how bathrooms at gas stations can be YUCK!.. you know the kind where you don’t dare sit on the seat and you flush it with your foot ..yeah some are not the best. I could use a catheter at times but for the most part we do stop at the nicer ones if needed…

Before I leave I give dad his medication and tell him what time to take it and sit it on the bar for him and tell him I will call when his next medications are due and for him to call me for anything he needs.  I have been taking care of my dad for over 3 years since he got hurt I haven’t been home but one time since then and boy I do miss home(more on that later)…we have friends that will stop over while we are gone to check on him as well for us…

well I get all that is needed for my appointment and at this time I would grab my purse but you see we rescue dogs we work with a few agency’s that try to find forever homes for such wonderful dogs that would be put to sleep if we didn’t help (yes, more on that later) can’t wait to share with you the love they bring!!!!…but as I was saying about my purse well the one rescue dog chewed it up like it was candy and I don’t have another purse here but the look on her little face was priceless and all I could say is why oh WHY??? of all things this little one could have gotten into but NO it had to be that….my favorite purse…..

Dallas is nice as I pointed out above and then some but my town is here and my home is here out in the country I don’t miss the city life at all. I am looking forward to getting out of the house for a while and having private time with my guy since we don’t get any private time here at my dads home so we do enjoy the ride for the most part I just wish it was under better circumstances than going to the doctor’s office every month sometimes I have 2 doctors to see in one day there they do run me through the mill with blood work you name it they do it just to stay on top of everything and I am thankful to my wonderful doctors they all are great and caring..

I will do my best not to watch the idiots on the road and I will try to keep my cuss count down as well on this trip. I just want to try  and enjoy it the best I can and get there and back here safe. I do wish all drivers on the road a safe trip to and from where ever they may be going….

I just wanted to share what my day was going to be like…

Also do you get nervous during traffic and/ or doctors appointments?? … If so how do you handle it??…

anxiety how do you deal with it??…

what is your day like??…

OK …I will be posting more than I have in the past..as much as I can… A thank you to all my new followers… brings a smile to my face now chime in on here and speak your mind….

Until next time my friends smile you are all loved…

xoxo Suzette…

safety first buckle up
safety first
buckle up

 

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